Blog · October 1, 2014

Giant Leaps for EB Awareness

This past year it seems as if giant leaps have been made for EB Awareness. As Julia Roberts would say: “HUGE”! I still can’t believe it. It’s happening. Not only Awareness is happening, a cure is closer than ever. I have to pinch myself!

IMG_4663_skLast year, right around this time, the book ‘Courage Under Wraps‘ by Jodi Champagne, depicting Nicky’s Life with EB was released, which led to the FOX11 coverage of it called ‘A Rare Condition‘. Because of all of this coverage, Nicky’s Facebook Page swelled with likes, words of encouragement and so much love. I honestly feel like it saved me in so many ways. So many took it upon themselves to do fundraisers for Nicky to get him a new chair and other medical and non-medical needs, Jodi and her husband helped to remake his bedroom, his dad’s work decided to commit themselves to EB Awareness and so many kind souls fulfill Nicky’s wish list on Amazon. All of this is so very humbling. Like I said before, I have to pinch myself! Nicky’s own school just recently did an EB Awareness week for Nicky, and Nicky is the ‘face of EB’ for the website HeroLife for the month of October.

Besides all of this going on with Nicky, there are other parents out there making an enormous difference. My heart swells with pride, thankfulness and humility over the likes of Andrea, who puts these amazing star-studded fundraisers for the EBMRF we are so privileged to attend, and to other EB parents who are determined to get their children cured by starting foundations, such as the newest one called EBRP (EB research Partnership) that just launched today.

I don’t know why, but it still seems a bit of a fairy tale when I hear of people in general, let alone celebrities, get involved in EB Awareness. 10 Years ago, if someone would have told me that Adam Sandler, Brad Pitt, Courtney Cox or Orlando Bloom would be so touched by EB children to take time out of their busy lives to donate and attend fundraisers I would have told you “impossible”. Perhaps my incredulity stems from the fact that for so many years I honestly thought nobody cared. Heck, Nicky is shocked that people care still. His entire childhood consisted of me and him, #teamNicky as we called it, taking care of things, slaying dragons on our own, and let me tell you, these dragons were fierce.

As I am wrote in my book (it’s almost done, promise!!), since Nicky was born I tried my best to get the word about EB out, I mean, this was such a horrendous condition!! Calling it horrible is an understatement, it truly is.  As hard as I tried, starting with my website, then with the Red Ribbon for EB Awareness, assorted graphics & posts, support groups and what not and the book Living with Epidermolysis Bullosa, I felt I had made an insignificant dent. Totally insignificant. I mean, nobody even cared about the ribbon, nobody even wanted to use it or criticized the color etc. Here I was, trying to do ‘something’ and all I got was GRIEF back. I wish so much I had some clout. I wish so much I “knew someone”, you know, someone that people listen to when they spoke. I knew no-one.

I wanted to post a couple of pics today while I am at it, since this blog is the only ‘safe place’ for me to post these pics. I always felt that EB needs to be seen to be understood.


The first one is of his left knee, I know it does not look good, but to us is looking fantastic! The wound is so much smaller than it used to be. The wound is usually at least 3 times bigger, and the knee hasn’t been totally healed since Nicky was 3. Imagine that.


The second one is of his right foot, as to us also looks quite good. Normally he has a wound area that goes all the way around the ankle and the top of the foot, so we’re thrilled.
His toes do look weird, I know the big toe is fused with the toe next to it, and the pinky toe is fused to the one next to it as well. The middle toe is somewhat still floating all on its own, but the bottom part of the toes it’s all fused together. It’s the madness of RDEB. Fusing is the hallmark of the Recessive Dystrophic form of Epidermolysis Bullosa. Up until the time when Nicky was 5 or 6 I used to put gauze in between the toes to keep the toes separated. Then Nicky told me how uncomfortable that was and I stopped. I realized that I didn’t want to make Nicky more uncomfortable than he already was. It’s not like he ‘needed’ the toes for anything, right? We have to pick our battles.

Love and Light,